Parents say thank you to charity who helped their family

News provided by The Sick Children's Trust on Thursday 13th Sep 2018

We believe keeping families together significantly improves the recovery of seriously ill children.

Local parents, who were supported by The Sick Children’s Trust for six weeks after the birth of their seriously ill baby boy, have spoken out in support of the charity to raise money and awareness for a cause close to their hearts.

Leanne Richards, from Braintree, along with her husband, Richard, were shocked when they were told their unborn baby’s heart was on the wrong side of his body at a 20 week scan. Sent to London for further tests, cardiologists reassured the couple that their baby’s heart was fine and Leanne needed no further monitoring.

However, when baby Joshua was delivered at Broomfield Hospital, it became clear there was a problem almost immediately – his oxygen levels were dangerously low and he was struggling to breathe. A scan of Joshua’s chest revealed there was a large mass on his chest that was pushing his heart into his lungs, causing the severe breathing difficulties. The worst news came when a further X-ray confirmed Joshua had congenital diaphragmatic hernia (CDH). This meant his diaphragm had failed to form correctly and had therefore allowed his intestines to move up into his chest cavity, which was putting intense pressure on both his heart and lungs.

Just two hours after his arrival, Baby Joshua required an emergency transfer to The Royal London Children’s Hospital for lifesaving surgery. Mum Leanne who, along with her family, recently helped raise awareness of The Sick Children’s Trust during a service at The Church in Great Notley, says:

“When the doctors discovered what was wrong with Joshua they acted fast and were immediately on the phone to The Royal London Children’s Hospital. We felt like our lives shattered into a million pieces when we found out that our baby had just a 50% chance of surviving the major operation he needed to save his life. Doctors advised us that even if he survived the operation, it was likely that Joshua would suffer from health complications such as congenital heart disease (CHD) and problems with his lungs and breathing, as a result of them being squashed in his chest.

“My husband went home to pack our bags and be with our daughter, Isabella, who was only two at the time and needed one of us in the house whilst my parents drove me straight to London as soon as I was discharged. I was in shock and just needed to be with Joshua. I assumed we would be staying in a hotel, as we were an hour and a half from home, but at this point booking and paying for a hotel was the last thing on my mind. When I arrived on the ward where my baby was being treated, and had seen with my own eyes that he was stable, I spoke to a nurse who told me about The Sick Children’s Trust’s ‘Home from Home’ Stevenson House, located just minutes from Joshua’s hospital bedside.

“She handed me a key and said that there was a team of people over there who would show us around and support us in whatever way they could, giving my family a room, and that it was completely free of charge. Even with everything going on I felt I huge sense of relief. For Richard and myself to be given the opportunity to stay so close to Joshua, and the fact that Isabella was welcome too, was more than I could’ve asked for at that moment.”

Stevenson House supports families with sick children being treated at The Royal London Children’s Hospital in London. Baby Joshua underwent lifesaving surgery at just three days old. Although the operation was a success and Joshua’s intestines were successfully put back into his abdomen, with surgeons repairing the hole in his diaphragm, he wasn’t yet out of the woods. A week after the lifesaving surgery Joshua collapsed in the middle of the night with suspected sepsis and needed fluid resuscitation. Mum Leanne continues:

“When the direct phone line between our room in Stevenson House and Joshua’s ward rang in the middle of the night we immediately knew something was wrong. Within minutes we were there by Joshua’s side. It was awful to see our baby back in an incubator and intubated, unable to breathe on his own. We couldn’t believe he had collapsed. After that trauma, thankfully, Joshua slowly began to get better, but it wasn’t straightforward and he had to overcome several challenges along the way.

“Stevenson House was amazing throughout this time. The main thing for us was that Isabella could also be in London. She began to call it her other home, loved all the toys and made friends with the siblings of other children receiving treatment in the hospital. The ‘Home from Home’ was so close to the ward so one of us could be with Joshua or Isabella at all times.

“I also received a lot of support form other families staying in Stevenson House. Lots of them also had poorly babies so it didn’t feel as if I was alone. The house staff were also fantastic, as were the corporate volunteers who came in and cooked meals for the families – this meant that when my husband was at work and I didn’t want to cook, I didn’t have to. There was also a breast pump in the house, so that I could be giving my full attention to Isabella and expressing milk for Joshua at the same time.”

The Sick Children’s Trust runs ten ‘Homes from Home’ across the country, giving families with seriously ill children free accommodation just minutes from their child’s hospital bedside. The charity supports around 4,000 families every year and relies entirely on voluntary donations. It costs the charity £30 to support a family for one night. Stevenson House Manager, Deborah Leonards, says:

“When Joshua took a turn for the worst we were all so scared for him. We had got to know Leanne, Richard and Isabella so well over the weeks and were very invested in his progress. It was a very happy day for everyone when Joshua was discharged home and the photos Leanne has sent us in since show just how well he is doing.

“As a charity we rely on voluntary donations so that we can continue to run our ten ‘Homes from Home’ across the country, supporting families with seriously ill children in hospital. The money the Richards family raise from their fundraisers will go a long way towards helping us continue with our vital work.”

About The Sick Children’s Trust

The Sick Children’s Trust is working to a future where every family with a seriously ill child in hospital will be able to stay together, just minutes from their child’s bed during their treatment.

We believe keeping families together significantly improves the recovery of seriously ill children. We provide free, high-quality ‘Home from Home’ accommodation, as well as emotional and practical support, to families with sick children in hospital in the UK.

The Sick Children’s Trustwas founded in 1982 by two paediatric specialists Dr Jon Pritchard and Professor James Malpas. Today we have ten ‘Homes from Home’ at major hospitals around the country where families can stay free of charge, for as long as they need whilst their child is undergoing treatment.

We support around 4,000 families every year, and there is a growing demand for our ‘Homes from Home’ as children must increasingly travel long distances to get the specialist treatment they need. www.sickchildrenstrust.org

Press release distributed by Pressat on behalf of The Sick Children's Trust, on Thursday 13 September, 2018. For more information subscribe and follow http://www.pressat.co.uk/

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